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Welcom ( & others new to the list),

I entered your intro in a folder called introductions in the vault and hope

you will read some of our other intros there, join in on our polls (21 day

challenges), etc

You can post about anything but if it isn't directly related to TB or fitness

please tag it with an *OT* for *Off Topic* for folks who do not have enough

time for our message volume

Barb

who started out over 186 and is now 165 and ~10 inches off the waist since

last May

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  • 3 years later...
Guest guest

In a message dated 3/11/03 7:44:57 PM Eastern Standard Time,

karen_empey@... writes:

> He's okay, it's everybody

> else that has the problem!

>

lol, this is my 14 yo son. He knows he has autism but he doesn't think that

means anything. He does know it's usually a problem with everyone else

though!

Roxanna ôô

What doesn't kill us

Makes us really mean.

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Guest guest

Whoa - spending that long in the bathroom has NOTHING to do with AS - I

would ask him " WHAT are you doing in there? " Have him itemize. He might get

somewhat embarrassed and decide that one of the things he is spending so

much time doing in there he can well do in his bedroom!!!

/ 4makelas@...

Way, Way Up in Northern Ontario

----- Original Message -----

From: " Empey " <karen_empey@...>

amount of time

> spent in the Bathroom, both morning (getting ready

> takes approx 1 3/4 hours in the bathroom alone), and

> night - at least an hour. Any suggestions on how to

> cut this time down? He won't use a list to help with

> the tasks, in fact he's still denying the fact that

> he's been diagnosed with AS. He's okay, it's everybody

> else that has the problem!

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Guest guest

Hi, Agree there...I CAN'T get my AS 13yr boy to go near the bathroom...until

he was 12 I had to wash his hair while he screamed at me...we still have to

ask him to shower and remind him to use soap...he likes swimming but can't

stand washing...this IS an AS thing as it has to do with the feel of soap

lotion and shampoos's. Good luck with your new challenges. Kerry

-- Re: ( ) Welcome to

Whoa - spending that long in the bathroom has NOTHING to do with AS - I

would ask him " WHAT are you doing in there? " Have him itemize. He might get

somewhat embarrassed and decide that one of the things he is spending so

much time doing in there he can well do in his bedroom!!!

/ 4makelas@...

Way, Way Up in Northern Ontario

----- Original Message -----

From: " Empey " <karen_empey@...>

amount of time

> spent in the Bathroom, both morning (getting ready

> takes approx 1 3/4 hours in the bathroom alone), and

> night - at least an hour. Any suggestions on how to

> cut this time down? He won't use a list to help with

> the tasks, in fact he's still denying the fact that

> he's been diagnosed with AS. He's okay, it's everybody

> else that has the problem!

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  • 2 weeks later...
  • 4 months later...

Gosh, you've done a fabulous job of proving what a wonderful surgery

this is. Congrats on your stupendous losses - and being a size 8-10. I

can't imagine that happening to me, even tho I'm half-way to my own

mental goal.

I am curious to know more about your plan for breast surgery in Costa

Rica. Can you share more details, including costs? Welcome to the

place where we share all (well, almost).

Bobbe - 1998 top wt. of 284. 3/12/03 268.5, 8/12/03 202.5 = <66

lbs.> If you can dream it... you can do it! God, give me the

dream that you planned for my life.

Don't postpone joy.

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  • 2 months later...

Welcome Ruth,

We do have several members under the age of 18- my daughter is one of them- she

is almost 14 and is curently in a complete remission- thank the Lord.

Previously she was taking NSAIDS for her mild case - pain in both legs, bright

red swollen fingers- a cardinal sign right there! Unfortunately the meds did

nothing for the pain. She said they were like taking water.

Even Vioxx, Voltaren, etc... did nothing for her. God was good and gave a

spontaneous remission and we are praying for it to last. She missed the entire

school year of gym class and playing on the girls basketball team which she

really loves due to the pain being so bad.

I have once or twice put out a query to teens for a sublist to start up- but it

appears they have been too busy to deal with an extra activity. You are welcome

to try again- otherwise, feel free to jump right in here with everyone else on

the big list!

Some people seem to pin point the PA to starting after a viral infection or

fever, others say it is clearly genetic and runs in the family... Perhaps both

can be true.

Keep on participating, and welcome aboard.

S.

List founder

Still in Chicago -ton hospital

allowed on line for one hour today!

Going home on Thursday to CT through NY LaGuardia- hoping for good weather!

Cheerio everyone! and thanks for all the well wishes!

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  • 1 year later...

Hi ,

When I read your message I thought of how similar it was to my situation. I'm

31 years old, and have CMT as well, but I

definately found it progressed after my last pregnancy..I have a 4

year old, and an 18 month old. My feet burn at night, it started a

bit during my pregnancy, but if I do any exercise at all now, they

burn at night. If I'm at the park chasing them around (which I do a

lot of) or just do a lot of walking at work that day. My husband is

away in veterinary school, this is his last year (thank God) but I

find where he is away so much, he doesn't really understand how tired

I am either....I think he just think I'm using it as an excuse to

avoid.....marital relations, if you get my drift.

Anyway, one thing which I have really found to help is an early and efficient

bedtime routine. My 18 month old goes to bed at 7, and Sam goes to bed at 8.

Then, I have my chores to do, but I try to sit down and relax by 8:30 or 9 at

the latest, no matter what. I massage my feet, or rub lotion on them when

they're really bad...I've asked my husband for a foot bath for xmas, because I

find soaking them really helps.

So, know you're not alone, try not to do too much, I'm trying not to be so hard

on myself and try to rest more. Lately i'm trying to get to bed earlier, even

if I go and just read there for a while first. I'm finding that it helps. It's

nice that you've joined the group, this group has given me a lot of insight into

this disease. Looking

forward to seeing your posts in the future.

Karla from Newfoundland, Canada

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